Day +183. Still getting blood transfusions weekly and hanging on. We’re about 6 months post transplant and I should be getting my first set of re-immunizations (Tdap, MMR, etc.), but instead I’m juggling appointments with the reproductive health center and the transplant clinic to get things set up for the second transplant.
A few exciting updates since I last posted!
I’ve banked my swimmers. I have successfully frozen a sperm sample! I spoke with my urologist yesterday and, after re-learning the wonderful details about in-vitro fertilization (IVF) and the latest technologies in that field, I was that told that though I have markedly reduced sperm counts (due to the killing of germ stem cells in my gonads from the chemo) they were able to freeze roughly 8,000 motile, seemingly healthy sperm! I say seemingly healthy because morphologically they look good, but genetically we don’t know what damage might have occurred. Regardless, this is amazing considering I could have ended up being completely sterile.
This also means if I want to ever pursue IVF in the future, we have the option to, provided that there are viable sperm that survive the thawing, which in reality is the biggest concern right now. In a healthy man’s sperm sample, about 50% survive the thaw. There are no stats on sperm survival of a person who underwent chemo. So my urologist has strongly suggested banking more samples to increase the likelihood of getting viable sperm cells in the future. Either way, I’m glad and relieved that I’ve been able to take care of any future genetically related children I may or may not want.
We have a potential donor. I got a call last week from my transplant coordinator saying that they’ve received a blood sample from one of my potential donors! This is basically like saying we’ve found a donor because at this stage, by providing a sample, the donor A) has been contacted, B) has agreed to be a donor, C) was willing to provide a sample to test. All UCSF has to do now is to confirm the HLA-type in house and then we’re ready to go. Though I don’t know specific details about this donor yet, I do know that everything about this person is “what we want.” I’m assuming that means this person is a male, is young (20s to early 30s), is healthy, and can provide a stem cell donation.
Since last week, I’ve been arranging a ton of appointments to gather information for my insurance to verify that I am healthy enough to undergo a transplant (again). Another ECHO, EKG, PFT, and tons of blood work to prove that yes, indeed, I can do this. Appointments with a social worker are lined up as well to talk about my caregiver and the plan that will be in place once I’m discharged from the hospital.
The plan currently is to have my mom come out from Texas to be my caregiver while I recover for 3 months. A tough thing to negotiate, but I believe things will work out better this time.
So the ball is finally rolling and we’re moving towards transplant #2! We’re hoping to coordinate with the donor (and donor center) for collection by the end of month meaning that we’re shooting for a hospital admit date by the end of September. I’ll keep you all posted as I find out more information, obviously. 🙂
I’m really excited, but also very nervous. Sure, I’ve done a transplant before so I know what to expect, but at the same time the preparatory regiment will be different with chemo plus total body irradiation (TBI). From what I’ve been told and what I’ve read online, TBI, while a painless procedure itself, leaves you feeling pretty crappy. So I can anticipate being more tired, more nauseous, having more diarrhea, and more brain fog. I’m hopeful that I’ll stay in good spirits during this second round, but I still can’t shake the nerves and anxiety around it all.
The TBI should basically blast my already crippled immune system, which should help the graft (from transplant) hold better. Some research has shown that this is the case, but then again every case, every patient is different. I’m hoping for the best outcome.
More to come soon.
The Bald Heme-iola 